The symptoms of endometriosis can differ from woman to woman. You may have no symptoms at all. One of the most common symptoms is long-term pelvic pain lasting six months or more. This feels like period pain and may come before or during your period.
Other symptoms you may have include:
- pain during sex
- changes to your periods, such as heavy bleeding
- extreme tiredness
- unexplained difficulties becoming pregnant
- blood in your urine
These symptoms may be caused by things other than endometriosis. If you have any of these symptoms, see your GP.
Less commonly, endometriosis on your bowel can cause pain when you have a bowel movement. You may also have blood in your faeces during your period. If you have endometriosis on your bladder, it can cause pain when you pass urine.
Symptoms of endometriosis usually get better or disappear after the menopause.
Your GP will ask you about your symptoms. They may ask to carry out a vaginal or rectal examination. A vaginal examination involves your GP inserting gloved, lubricated fingers into your vagina to gently feel for any abnormalities in your uterus (womb). At the same time, he or she will use their other hand to lightly press on your abdomen (tummy). A rectal examination involves your GP inserting a gloved, lubricated finger into your anus. This may feel uncomfortable but shouldn't be painful.
You may also be asked to have an ultrasound scan. Ultrasound uses sound waves to produce an image of the inside of the body. To look for endometriosis, an ultrasound scan may be performed using a sensor placed in your vagina.
Your GP may refer you to a gynaecologist, (a doctor that specialises in women's reproductive health) for further tests. It may take some time for you to get a diagnosis of endometriosis because the symptoms are similar to some other health conditions. The only way doctors can be sure that you have endometriosis is to check through a procedure called laparoscopy. This is carried out under general anaesthetic and involves a gynaecologist looking inside your abdomen using a narrow tube-like telescopic camera (laparoscope) that is inserted through a small cut. This is sometimes called ‘key-hole surgery’.
Sometimes, rather than you having this procedure right away, your doctor may suggest trying treatments for endometriosis first, to see if they help.
You may also be asked to have an MRI scan. An MRI scan uses magnets and radio waves to produce images of the inside of the body.
Your gynaecologist may tell you the stage of your endometriosis after your laparoscopy. This is a description of how large your areas of endometriosis are, and how much they are affecting other tissues. There are four stages of endometriosis: stage one, two, three and four. Stage one is the most mild, while stage four is the most severe.
About one in three women get better on their own over six to 12 months. Other women may need to have treatment to reduce their symptoms. Your treatment depends on factors such as how bad your symptoms are and whether or not you want to have children.
A number of treatments can help to manage your symptoms, but they don’t always work in the long-term. About half of women find that their symptoms come back. You may choose to have another course of medication or more surgery if this happens.
If you need pain relief, you can try over-the-counter painkillers, such as paracetamol and ibuprofen. Always read the patient information leaflet that comes with your medicine. If you have any questions, ask your pharmacist for advice.
Hormone treatments can help to reduce endometriosis and lessen your pain. If you’re not trying to get pregnant, your doctor may offer you the combined oral contraceptive pill or the progestogen-only pill. You’ll be offered these for a few months at first, but if they’re helpful, you’ll usually be able to carry on taking them.
If they don’t help, you doctor may advise you to try another type of hormone treatment. These may include the following:
- progestogens such as norethisterone
- gonadotrophin-releasing hormone (GnRH) analogues (such as buserelin)
- androgens such as gestrinone
These medicines may be given to you for a few months at a time. After a break, your doctor may suggest another course of treatment or surgery if your symptoms come back.
Each of these medicines has different side-effects. Side-effects are the unwanted but mostly temporary effects you may get after having your treatment. Your doctor can explain these to you and recommend which treatment may be most suitable to try first.
You may also be able to have cognitive behavioural therapy (CBT) to help you to manage your pain. This can help you to understand your thoughts, feelings and actions. Through techniques you will learn, you can change the way you react to and cope with things such as pain.
Surgery can remove areas of endometriosis. This can help to improve your fertility if your endometriosis is affecting it, and can also reduce your pain.
If you have surgery to diagnose your endometriosis, your gynaecologist will remove the endometriosis during the procedure if possible.
Surgery can often be done by laparoscopy. This involves a gynaecologist looking inside your abdomen (tummy) using a narrow, tube-like telescopic camera (laparoscope) inserted through a small cut. He or she can remove your endometriosis by cutting it away or destroying it with heat from an electric current, a laser, or helium gas.
Endometriosis can come back after surgery, so you may need to have surgery again in the future.
If you don’t want to have children in the future, you may be offered a hysterectomy. This is a larger operation to remove your womb and sometimes your ovaries. This operation can also be done by laparoscopy. Having a hysterectomy may reduce your pain and make it less likely that you’ll need to have further surgery in the future.
The exact reasons why you may develop endometriosis aren't fully understood.
Endometriosis might be caused by a combination of factors. For example, your immune system or hormones might play a role. Endometriosis may also run in families, as you’re more likely to get it if your mother or sister has it.
There are certain factors that may make you more likely to get endometriosis. For example, you're more likely to get it if you:
- started your periods at an early age (before the age of 11)
- have frequent, heavy painful periods
- haven’t had any children
Some complications of endometriosis are listed below.
- Scar tissue can attach to organs in your pelvis and abdomen (tummy). These scars are known as adhesions and can cause pain.
- Your fertility may be reduced. Up to four in every 10 women with endometriosis have reduced fertility.
- Endometriosis increases your risk of getting ovarian cysts. These can rupture and cause pain and reduced fertility.
- Endometriosis on your bowel may cause it to become blocked.
- There’s a small amount of proof to suggest that you may have a slightly increased risk of ovarian cancer.
Speak to your GP or doctor if you’d like more information, or if you have any questions about the complications of endometriosis.
I have endometriosis. Does this mean I'm more likely to get cancer?
Endometriosis is a benign condition, which means it isn't a type of cancer. There’s a small amount of proof to show that women with endometriosis may have a slightly increased risk of getting ovarian cancer. However, proof is needed to be sure.
Endometriosis may be linked with an increased risk of ovarian cancer, but more proof is needed to be certain. Researchers aren’t sure why there might be a link between the two conditions. It might be that the same things that can cause you to get endometriosis can also cause you to develop ovarian cancer.
You’re more likely to develop ovarian cancer if you:
- have a mother or sister with the condition
- haven’t had any children
- started your periods at an early age
These same factors make you more likely to get endometriosis too.
If you’re concerned about your risk of ovarian cancer, talk to your GP or doctor.
I’ve heard about a procedure called LUNA – what is this?
LUNA stands for laparoscopic uterine nerve ablation. It’s an operation that aims to reduce your pain.
LUNA is a procedure that aims to reduce your pain by cutting or removing some of the nerves and ligaments attached to your uterus (womb).
Researchers have been investigating how well LUNA works. They've found that LUNA isn't very successful at reducing pain linked to endometriosis. Other types of surgery may be better at easing pain caused by endometriosis. Ask your doctor if you’d like more information about your treatment options. They will happily answer any questions you may have and will be able to recommend the best type of treatment for you.
Will a hysterectomy cure my endometriosis?
Although there’s no cure for endometriosis, having a hysterectomy does stop endometriosis coming back in most women.
If your endometriosis comes back after being removed through surgery, your doctor may recommend an operation to have your uterus (womb) and ovaries removed. This is called a hysterectomy with bilateral salpingo-oophorectomy.
Your menstrual cycle is controlled by hormones in your body, much of which are released by your ovaries. These hormones trigger the thickening of your womb lining and your periods. They also trigger the same changes in areas where you have endometriosis. So, by removing the ovaries with surgery, this can stop areas of endometriosis swelling and bleeding, which can reduce your pain.
Having your womb and ovaries removed, along with areas of endometriosis, may make your symptoms go away for good. It doesn’t always work though – some women still have symptoms of endometriosis after the operation. This might happen because areas of endometriosis are missed in the operation, and remain in your body.
You won’t be able to have children after you've had a hysterectomy, so it’s important to discuss this with your doctor beforehand. Having your ovaries removed may also cause you to have symptoms similar to the menopause, such as hot flushes and mood changes.
For more information about your treatment options, or if you have any questions, speak to your doctor. They will explain the options available to you, as well as their benefits and risks.
- Endometriosis UK
0808 808 2227
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- Endometriosis UK
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